Hi everyone,

I'm a 29 year old, married, mother of 2. I was diagnosed with Post Concussion Syndrome about 3 months ago. I fell and hit my head and have not gotten over the symptoms since. I wake up every morning feeling like I haven't slept at all. I have a headache, nausea, dizziness, unsteadiness, and a lack of focus. All of these symptoms become worse with increased activity. I get irritated and frustrated easily. I have had every test under the sun: CT with and without contrast, MRI, EEG, ABG, Xrays, bloodwork, and they have all come out negative.

I see a neurologist every 2-3 weeks and he tries to treat some of my symptoms with new meds every time i see him. I started Nuvigil yesterday to try and combat my fatigue. I am also taking an antidepressant at night for sleep, Amitryptyline, and I take Treximet when my headaches become migraines (3-4 times a week when I overdo it). My neuro tried putting me on Topamax to try and prevent the migraines, but it made me so tired that couldn't move off the couch.

The Treximet works fantastically, and I have gotten used to the side effects (feeling like I'm having a heart attack). It's great to know that if I do get a migraine, I can at least treat it effectively. It's all the other symptoms that are tough. I am not able to drive or work, and feel quite cut off from the world.

I could use some support from people who understand what I'm going through. My husband is wonderful, but there is no way he can really understand what's going on.

I'm also struggling, because about a month ago I had an episode where my left leg and arm became very weak and heavy. I went to the hospital thinking it was a stroke, and ended up also having issues with having to breathe manually. I was not breathing automatically, so every time I would fall asleep, I would stop breathing and they would wake me up before my pulse stopped. After 3 days, all my symptoms were gone. I was discharged with no answers.

I know 3 months isn't really that long to be struggling with something, but I am normally a very active person. My kids are 5 and 7 years old and it's tough to keep saying, "Mommy's too tired". Thanks for listening!

Greeting Kate,

I sustained a serious brain injury in a car accident over two years ago and continue to struggle with many of the symptoms you mentioned. Like you, I also have a young family and know all too well the pain of having to tell your child that you’re too tired to do things.

In fact, it’s the impact of the injury on my daughter that causes me the most distress. I am pretty stoical, but I have broken down weeping after seeing the disappointment in her little face when I told her it’s too dangerous for me to take her skiing or I just don’t have the energy for a tea party. I also hate myself when my explosions of temper make her cry. Yes, I understand what you’re going through. However, as I’ve been traveling this road a bit longer, I’ve also learned a few things that might help you.

Firstly, it’s probably best to be completely honest with your kids about what has happened and how it is impacting your behavior. My daughter is very young, but she understands what the frontal lobe does. I know it seems like heavy stuff for a child – but isn’t it better than fearing your mother had become some sort of unpredictable mad woman?

Secondly, be assured, that even on your worst day, your children know that you love them.

On the medical front, the frequency of your visits suggests that you have an attentive neurologist. You’re lucky. As a mommy, I recognize the delicate balance you’re struggling to maintain between controlling your pain and being mentally present for your children. It’s seems you’re besting me with that juggling act.

As for the testing, it’s not that unusual for standard scans to be less than perfect tools for diagnosing brain injury. (I can give you the technical song and dance if you like.) Neuro-psychological testing can be a much more useful tool for revealing actual brain function. If you haven’t had a neuro-psych, I would strongly suggest that you consider it.

A brain injury can be a confusing, frustrating and even life-altering event. Is it surprising that our loved ones have trouble understanding what’s happening to us, when we’re often bewildered ourselves? It’s good that you’ve recognized your need for support and are reaching out. Here at NT you will find many people who understand how you’re feeling and some with almost encyclopedic knowledge of TBI symptoms, medications and treatments.

If you haven’t already done so, I’d suggest you visit the Brain Injury Association of America webpage www.biausa.org It’s an excellent source of information that might prove useful to you and your husband.

BIAUSA has a New York State Chapter:
BIA of New York State
President: Marie Cavallo, Ph.D.
Executive Director: Judy Avner
10 Colvin Avenue
Albany, NY 12206-1242
Phone: 518-459-7911
In State Toll Free: 800-228-8201
Fax: 518-482-5285
E-mail: info@bianys.org
Website: www.bianys.org

If you contact them, I’m pretty sure that you will find brain injury support groups meeting in Buffalo. Brain injury can be scarey and isolating so I’d recommend joining one.

Again, welcome to NT and feel free to Private Message me if I can be of any help.

Rest and Get Well
p.s. The Sabres, eh? Did you become a fan before or after you hit your head?

Hi Hockey,

Yes- I am a huge Sabres fan and have been for about 10 years. Let's go Buf-a-lo! Preseason starts next Thursday!

Anyway... Thank you for your warm welcome. I am really appreciating being able to share with others who get what I'm going through. After your post, I was immediately moved to speak with both of my children. I asked them if they knew why Mommy was tired and cranky sometimes, and they both knew it was because I had hit my head. I guess my hubby has covered all of that with them. He's really been amazing! I told them both that no matter how cranky and tired I am, I still will always love them. I was even motivated to tuck them in tonight and was able to sing the song we always used to sing together "Jesus Loves Me". It was a wonderful evening.

I do have an attentive neurologist, and after really getting into some of these posts, I can see that I'm ahead of the game and 3 months isn't so bad. I am interested in the neuro-psychological testing and have also started my own little therapy.

I read an article where Sports Medicine Specialists at the University at Buffalo had used some low activity exercise therapy in some of their injured atheletes. I spoke with my neuro about it and he didn't seem on board with anything other than symptomatic treatments. He said I was free to explore other options, but that his recommendation was to get as much rest as possible.

I was feeling depressed about gaining so much weight since I've been sick, and I feel like any step towards anything could be positive. At the least, it might make me feel like I'm acting or fighting or something- I don't know.

So, I've started with Wii Yoga. I do the first 5 poses, or whatever I can handle until my head hurts worse or my other symptoms increase. I'm trying to track my symptoms in a blog so I can see if there is any progress. I did too much on Tuesday, and took a break until Friday. I did 10 minutes every day since.

I feel pretty wiped out after, but I can't distinguish if it's any better or worse. I'm looking for more long term, I guess. It's nice to feel like I'm doing something- at least gives me the illusion of control.

Thanks again for your support and advice. I hope I can be a helpful member of this community along the way.

Hi Kate

I'm Donna, I would like to suggest that you ask your neuro if he would consider sending you for some physical therapy. See if you can find one that specializes in balance and stuff like this. I believe its one of the things that
helped me the most for my last concussion.

I needed it because of the issues anyway, but sure was nice to have a bonus solution to the concussion.

Donna

Hi Kate,
Go Sabres! We're from Orchard Park.
My 16 year old daughter is suffering many of the same symptoms as you. She got hit in the back of the head with a football in P.E. Class in October, then got hit with a volleyball in Nov. when she went back to P.E. She then hit her head in March on her bunk bed.
She could not tolerate the Topamax either. They call it "DopaMax" for a good reason! Daily Elavil had same reaction.
We tried the Clinic at UB this summer, and did not have any results from it. The docs there are used to treating athletes with concussions, the point being they are already in good physical shape, and they respond to the exercise therapy positively. It cost me $250 to have her evaluated, and it was not covered by insurance, though the therapy sessions were.
She is doing pt/ot at Children's Hospital. She has quite a lot of double vision, especially when reading. They have her using a eye patch and reading out of one eye at a time. She can get through some of her homework that way, but I still have to read aloud to her.
I am going to the DENT neuro. headache center this week for a second opinion, because I cannot stand seeing her in pain every day. They don't want to give her anything for the pain because of her age, but her quality of life has crumbled and she is getting depressed.
Hang in there !

Hi Kate,

You actually have a lot of therapeutic options available to you. Most of them are considered alternative therapies and aren't covered by insurance, but they do work for brain injuries. You can find a lot of info on google about these. Here is a list of them.

1. Neurofeedback
This is the process of training your brainwaves. It has been around
since the 1970's and has been used extensively to rehab brain
injuries. I would contact dr. diane stoler for this (just google her
name). She can help you or point you in the direction of someone who can.
2. Hyperbaric Oxygen Therapy
This has also been around for a while and has been used
extensively to treat brain injuries. If you are interested in this,
make sure you contact an independent place as the hospitals are
very expensive.
3. Vision Therapy
Only look into this if you are experiencing vision and balance
problems. Again, it has been around a while and has been used
extensively for brain injury rehab. Check out N.O.R.A. to find a
therapist.
4. Vitamin and Diet Therapy
Get a good B complex vitamin. You should also get on a fish oil
supplement. Eat lots of protein and cut down on the processed food
and simple carbohydrates.
5. Medication
There are some medications that are used extensively in Europe
and Asia to treat brain injuries. Doctors on the US haven't heard of these because they weren't taught about them in medical
school and because no drug company wants to push them through for FDA approval because the patents expired on them a long
time ago. They include:
A. Oxiracetam
B. Cerebrolysin
This is a bit more "hard core" because it has to be taken I/V or I/M. So, you would need your doctor to show you
how to do that. However, the studies that have been done on this drug have shown remarkable improvements in
symptoms.
C. Hydergene
6. Meditation

This is by far not an exhaustive list, but I think that these are the main therapies being used to treat brain injuries. Many neurologists, I would actually say that 99% of them, don't really know anything about concussions. So, take whatever your neurologist says with a grain of salt. The problem with brain injuries is that it is a very unconventional injury that doctors are still trying to treat in a conventional way.
So, good luck and rest assured that you can improve your condition.

Wow! Thank you so much to everyone who responded. It's been so great to have a community with people who know what's going on. I love that I am overwhelmed with information on ways that I can seek help. I am going to sort through and tackle some of this stuff one at a time.

Donna,

Thank you for the suggestion of physical therapy. I do have so much tightness in my neck and shoulders all the time, and am going to look into being able to set something up. I definitely want to work on my balance and coordination as well, so great suggestion! Did it help relieve some of your headaches and symptoms?


Mitch,

Thank you for your reply. Amazing that I could come online searching for a community, and there would be someone literally in my community! I'm very sorry to hear that your daughter has to go through this at such a young age. That's really tough, but I'm glad she's got her Daddy fighting for her and giving her the support and help she needs- kudos to you!

I'm glad to have the information about the trials at UB. I called over there and they said they weren't even running it anymore for the public. I'm happy to learn from your experience and not waste the time and money over it.

I see Dr. Kang at DENT. He's the neuro that I've been seeing since I hit my head. He's very quick and to the point, but he also seems very smart and has a whole arsenal of meds to try. Every time I see him, he's trying something new. He says straight out that the condition is self-limiting and self-healing and that he can't cure it, but he wants to treat as many symptoms as he can. He also sees me every 2-3 weeks to track my symptoms and try new things. I really hope that he can give your daughter some relief from some of her symptoms.

I feel very blessed that I am done with school, I can't imagine what she is going through. Again, I'm glad to see that she has an advocate in you.


MHR,

Wow, thank you for all of that advice! I am going to research all of this information and dig through it. I don't see my neuro again for 3 weeks, as I just saw him before I found this community. Have you tried any of these therapies or know anyone who has? I'd be really interested to hear about it. You are right about the brain being unconventional. It's so weird to go through something that doesn't have a cut and dry solution. Good luck to you and thank you again for your post.

Kate,

I am impressed that your neuro is concerned enough about you to see you so often. I had a seizure in the ER and my concussion resulted from falling out bed while having another seizure and the bed rail was not up. My neuro works for the hospital and I am pretty sure that she doesn't want to treat the PCS because that would admit that the hospital was at fault. She continues to explain that the symptoms could be a result of my seizure meds. I have printed out the symptoms of PCS and the symptoms of Lamictal and by far I am suffering from PCS. I even saw a sports med doc who confirmed this diagnosis, but she is still not will to help me out.

What I really want to know is if anyone has symptoms a day after you do something. I can work out one day and everything seems fine, but the next day my head hurts so bad I sometimes have to spend it in bed. If I have to work, I suffer through the day. I couldn't sit through a Wisconsin Badger football game because of all the noise and lights. The next day I felt like crap again. This past weekend, I attended a birthday party that included a small acoustic band that was not loud by any means, but the drunker people got, the louder they got. I had to go outside numerous times because I could not take the noise and the flashing lights. So my ride home yesterday (3-1/2 miles) was one of my worst rides home with the bumpy roads. Even lying my head on a pillow was painful. When I got home I tried to sleep it off, but that didn't help either. This part is all new to me because the accident happened in December, so football games, etc. bring up a whole new experience than what I have had the past few months. The longer this goes on, the more frustrated I get. I have two kids who want their mom to enjoy things with them. I am thinking about another opinion, but keep dragging me feet.

Kate,

I too have been diagnosed with PCS, although I was diagnosed nearly a year ago. I was hit in the head with a volleyball while coaching for my school I taught for. My case has become a fight with Worker's Comp, and it is a joke! I am 28 and have been active, and even am a PE teacher, but this has left me 35 pounds overweight and completely disabled. I have had a CT Scan and MRI of my neck, but nothing showed up. I struggle with bright lights, loud noises, fast moving objects, getting to sleep and sleeping well - I wake up fatigued everyday and fight a headache daily. I have been treated for Vertigo, and my Vestibular therapy helped big time with my symptoms. It decreased the intensity of my headaches, and helped so that I could get some of my daily function back. I was hit on Sept. 9, 2009 and even today I am still struggling with headaches, spatial awareness, my mood swings are terrible and there are times I don't feel comfortable driving because my attention is terrible. I have done neuropsychology testing and met with a physiatrist and neither of those found anything worthwhile. The only thing that seems to be helping right now is my neck therapy. I have a Certified Orthopedic Message Therapist/Physical Therapist that has helped reduce the number of headaches I get, but that is the only symptom that gets relief.

I have done a lot of research, and have found there are Cognitive Rehabilitation centers across the nation that help people with PCS and TBI's regain their "brain power" so to speak. Apparently there is a way to regenerate the damaged areas of the brain back to their normal functioning. The only hard part is finding a doctor willing to refer you to them. I have a great neurologist, but even he says that with PCS it can take months to years to fully recover.

I lost my job, lost my ability to enjoy my hobbies, and it seems the longer time goes on the more symptoms show up. It was 5 months after I was diagnosed that the symptoms hit the worse part, and I had to take a month off of work and do nothing but rest in a quiet environment. It helped, and I learned from it that when the symptoms get real bad, you have to find a way to get away from stress. My neuro said that stress is the WORST for PCS.

You aren't alone Kate! I am glad to find this to know I am not CRAZY!!! Keep fighting for your health care, and don't give up! My neuro told me there is a great resource in Philadelphia that can test the brain to see exactly what is damaged. I can't remember exactly where (go figure with my injury) but you might want to check into it! Good luck!!!

Hi,

I'm sorry for what you are going through. It's awful that you are not getting the help you need. My neuro is a headache specialist and I really have my general MD to thank. She is an advocate for me and knows her limitations. She is always quick to refer me out if she can't handle what I'm dealing with, and has a great arsenal of referrals.

Are you taking any medications for any of your symptoms?

I have really limited my calendar ever since this happened. I know my limitations, and have scaled everything back. Anything that I do outside of my house is a choice. When I make that choice, I know that I'm going to deal with the aftermath. So, I just have to decide what's worth feeling like garbage for as long as I take to get back to "normal".

My sister is getting married in less than 2 weeks, and I am her maid of honor. I am doing what I have to do for her, and I don't leave the house otherwise unless it's for a dr. appt. My husband, 2 kids and I have season tickets to the Bills this year, and we're selling them off week by week, because I can't handle going to the games. We tried to go to a preseason game and I was throwing up by the end of the 1st quarter.

You are right- SO FRUSTRATING!

I used to be quite the social girl, but now I find myself saying no and losing friends one by one. My husband apparently spoke to my kids and explained how being around Mommy has to be like being in the library. What's amazing is my 5 and 7 year old get it. They forget and make mistakes, but they are so understanding about why I can't do things and go places.

I'm very lucky that my husband is so amazing. I also come equipped with a church family that is amazing. Someone makes a dinner for my family once a week to give us a break. My extended family is all in the area, and they help me by taking the kids out for fun things. God has certainly given me the tools I need to get through what I'm going through.

It still sucks that I can't be the one to take my kids to do fun things, or cook a nice meal for my family, but I'm learning how to take the backseat and enjoy doing the things that I can do with them. I have become a much more humble person because of all this.

I'm glad to share with you and I'm glad you shared with me! Until a few days ago I felt so alone in all this! It's really nice to vent and share in this community!

Good luck! Keep me posted.